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I Don't Want To Make Y'all Mad


conniebky

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conniebky Collaborator

Hi everyone! Well, it's been one month since I've been to my doctor and went on hormones. I CAN eat gluten, I've been a little apprehensive to post this.....

It turns out my hormones were so screwy that it was giving me panic - not attacks, but panic syndrome.

I've lost 23 pounds. It was ME who searched the net and found that my symptoms equaled gluten intolerance.

Well, the hormones have helped except I'm still goofy.... well, my glasses broke so I was trying to super glue the frame back together but it was hard because I had to put my left hand on the frame and the right side on my knee to put the super glue in there .... so the glasses got stuck to my knee and you know how when you can't use your hands it makes your nose itch? So my nose started itching so I scratched my nose, but there was super glue on my finger, now there's my finger stuck on my nose and the glasses got stuck to my knee and Lord or Lord, I was a big ol' mess with all that but it all worked out.

I know you all said my doctor doesn't know what he's talking about, but I am better, only I can't take caffeine or sugar anymore.


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GFinDC Veteran

Well at least we got you off the sugar and the caffeine Connie. Now if we can just get you off the cheap booze, the roughnecks, the cream puffs, the chawin' terbacky and the glue sniffin' we will have something to celebrate! Lol, just kidding. Congrats on your perseverance with the health search paying off. :D

T.H. Community Regular

If you've found the reason for your symptoms, that is all that matters in the end. :)

I think so many of us here have been through so much where we had to hunt and fight to figure out what's wrong, most of us are just happy to hear that someone else has found the answer for their own health, no matter what that answer is. COngrats - I hope your doc had some good hormone therapy that works really well for you.

Skylark Collaborator

Connie, that's wonderful news. The only sad thing about it is that we'll miss your hillbilly humor around here.

Glad you're feeling better and rid of those awful symptoms, and kudos to your doc who figured it out.

chasbari Apprentice

She doesn't really HAVE to leave... does she?

psawyer Proficient

She doesn't really HAVE to leave... does she?

She does not, and is most welcome to stay. :)

WheatChef Apprentice

Eat a big soft pretzel for all of us.


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ravenwoodglass Mentor

Glad you figured out what was wrong and happy to hear you are feeling better.

Hopefully you were smarter than I was when I superglued my glasses to my nose after I ran into a cupboard door. When the end of the day came I just ripped them off my face. Yowch!!!

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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